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Volume 61 | April 30, 2023
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A program of NIH’s National Center for Advancing Translational Sciences | |
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Sites with Signed
DUAs
359
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Sites Sharing Data with Enclave
234
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COVID-19
Positive
Patients
7,480,175
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Rows
of Patient
Data
23.7 billion
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Approved
N3C Research
Projects
478
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New Patient Deduplication Functionality and Data Enhancement for N3C Enclave | |
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N3C is announcing the ongoing development of new functionality that has never been done before on a national scale! Patient deduplication and data enrichment in the N3C enclave uses PPRL (Privacy Preserving Record Linkage) to securely allow for duplicate patient data from across the U.S. to be combined without the use of personally identifiable information.
The deduplication process is not an automatic one. It requires conscious actions by each individual investigator. There will be no impact on existing analysis unless you choose to use the information. Researchers have complete control over whether or not to use the new columns of information. Though we are excited to expose this powerful new functionality, we also want to caution investigators of the importance of understanding the ramifications of deduplication before incorporating it into their analysis.
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Missed the training session earlier this month?
You can watch the recording here.
Be on the lookout for more information and additional resources regarding best practices, release notes, and training sessions.
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White House Launches Strategy to Advance Data Privacy Tech and Processes
N3C Referenced as NIH's venture into privacy-preserving technologies
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The White House released comprehensive new recommendations to promote user data privacy for both public and private sector entities, focusing on mitigating bias and maximizing efficiency in an equitable way.
One of the key technical approaches for privacy-preserving data sharing and analytics (PPDSA) identified by the White House in their strategy is privacy-preserving record linkage (PPRL). The National COVID Collaborative Cohort (N3C) was referenced as the largest national, free, and publicly available patient-level limited dataset in U.S. history using PPRL.
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N3C (Ref 70, 91): Page 17
"Privacy-preserving record linkage (PPRL) allows secure and private linkage of data related to an individual from different datasets. For example, the NIH National COVID Cohort Collaborative has created the largest national, publicly available patient-level limited dataset in U.S. history by harmonizing electronic health record data from health systems across the US and using PPRL to connect different COVID-19-related patient data from multiple organizations. Various techniques including secure multiparty computation or data perturbation approaches can be used to support PPRL."
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Medicaid Data Now Available in the N3C Enclave | |
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N3C continues to expand the availability of claims data. Medicaid data in OMOP format is now available in the Data Enclave. This data along with the Medicare data added last fall, provides researchers the ability to complete a patient’s medical history. With 16 data partners currently submitting CMS data, the N3C Enclave houses 173k Medicare patients and 38K Medicaid patients in total.
Medicare is an insurance program that serves people over 65, younger disabled people, and dialysis patients. With Medicare, medical bills are paid from trust funds that patients have paid into. In addition, patients pay part of the cost through deductibles and small monthly premiums.
Medicaid is a federally-funded assistance program run by the Centers for Medicare & Medicaid Services (CMS). It serves low-income people of every age. Patients usually pay no part of medical expenses or pay a small co-payment.
As claims data, CMS information provides slightly different information compared to EHR data; for example, rather than providing medication prescription information, CMS provides information on medication dispensation from the pharmacy. Enrollment in Medicare and Medicaid are well defined and thoroughly tracked, providing insight into patients' healthcare utilization vs eligibility that may be lacking in EHR data.
Investigators registered with N3C and whose institutions have signed the NCATS Data Use Agreement will be eligible to submit Data Use Request in the Enclave to access the CMS data (Medicare and Medicaid).
More info can be found in the Training Portal and a Training presentation will occur in May. There will be additional data release phases over the next several months. Be sure to check your inboxes and the CD2H slack channel for updates!
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N3C @ the CTSA Program Annual Spring Group Meetings | |
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The Clinical and Translational Science Awards (CTSA) Program Annual Spring Meeting provides an opportunity for the CTSA Steering Committee and Enterprise Committee members to engage and connect in person to support their goals, address priority or emerging public health issues, and share and/or define best practices across the consortium. This year's hybrid meeting took place from April 20-21 in Washington, DC.
Here are photos from the Informatics Enterprise Committee Meeting (iEC). The iEC works together to ensure that Informatics Accelerates Translational Science and Innovation.
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What the Research Community is Saying about N3C | |
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Lauren Chan MS, RD, LDN
Graduate Fellow & Ph.D. Candidate
College of Public Health and Human Sciences
Oregon State University
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"The N3C enclave is an impressive data resource that has enabled many scientists to produce impactful research during the COVID-19 pandemic. I have had the pleasure of working on N3C projects since 2020, and have been able to explore a wide variety of topics with the support of the Pregnancy, Machine Learning, and Diabetes Domain Teams. One of our recent publications aimed to assess the association of metformin use in patients without diabetes on COVID-19 severity, following similar studies of metformin use in patients with diabetes. Our study not only showcased the capacity of the N3C enclave to handle complex computational analyses but the rich data that enables this type of EHR investigation. The N3C has already done a great service to the COVID-19 research community and is a strong model for the collaborative, harmonized, and accessible data platforms I hope we see in the future." | |
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If You are Interested in N3C Real World Data Research, Results, and Conversations, attend the N3Community Forum!
The N3Community Forum focuses on Real World Data and meets every 2nd and 4th Monday. Please register for your Community Forum meeting link. After registering, you will receive a confirmation email containing information about joining the meeting and you will also have the ability to download the .ics file to create calendar reminders for future Community Forums.
PLEASE NOTE: Effective April 10, 2023, forums will take place in a new Zoom room. If you haven't registered for the new N3C Zoom link, you will need to do so before this forum.
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Share your thoughts: Looking for ways to bring relevant and exciting presentations to the Forum. Let us know if there are topics, presentations, or speakers you would like to see: bit.ly/N3CForumFeedback | |
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Upcoming N3Community Forums
Presentations take place every 2nd and 4th Monday from 5–6 p.m. ET/2–3 p.m. PT. To attend these and future N3Community Forum presentations, please register here.
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Missed an N3Community Forum or want to revisit a past Forum? You can find all the videos on our YouTube page. | |
If you need assistance with the N3C Data Enclave, the following options are available:
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In a research letter, a group of researchers found that vaccination against COVID-19 is associated with fewer major cardiovascular events such as myocardial infarction and stroke. The researchers analyzed data from the National COVID Cohort Collaborative (N3C) that included patients aged 18 to 90 years who were infected with COVID-19 from early 2020 to early 2022 (n = 1,934,294).
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To advance new therapies into clinical care, clinical trials must recruit enough participants. Yet, many trials fail to do so, leading to delays, early trial termination, and wasted resources. Under-enrolling trials make it impossible to draw conclusions about the efficacy of new therapies. An oft-cited reason for insufficient enrollment is lack of study team and provider awareness about patient eligibility. Automating clinical trial eligibility surveillance and study team and provider notification could offer a solution.
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Around the country, more than 76 sites are submitting data to the N3C, over 450 research projects are using N3C data, and more than 100 published manuscripts have used N3C data. The MetroHealth System contributes data to N3C, and University Hospitals will do so by mid-2023.
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One year ago today, President Biden issued the Presidential Memorandum and Fact Sheet that directed the Secretary of Health and Human Services to coordinate a whole-of-government response to the longer-term effects of COVID-19, including Long COVID and associated conditions. Chaired by Assistant Secretary for Health Admiral Rachel Levine, the Long COVID Coordination Council, comprised of fourteen federal agencies, published The Services and Supports for longer-term Impacts of COVID-19 - PDF and The National Research Action Plan - PDF reports in response to this call for action.
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Palantir’s Plan to Decipher the Mysteries of Long Covid
AT LEAST 65 million people are still suffering from long Covid, the mysterious cocktail of symptoms that persist in some patients more than 12 weeks after an initial infection. Researchers are still working to understand this illness, but it’s been slow progress so far.
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To help our community with a positive and productive workload, CD2H-N3C will schedule several “No Meeting Weeks” throughout the year. Most meetings will be canceled. Impromptu meetings can still occur to push through action items as needed during no meeting week. Workgroups and Domain Teams should check with their Leads to determine meeting schedules for that week.
2nd Quarter - May 29-June 2
3rd Quarter - September 4-8
4th Quarter - November 13-17
N3C support will continue with regular operations. If you have any trouble logging on to the enclave, please contact NCATSAuthSupport@mail.nih.gov. For all other issues please use the Support Desk.
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N3C Domain Teams
N3C Domain Teams enable researchers with shared interests to analyze data within the N3C Data Enclave and collaborate more efficiently in a team science environment. They include multidisciplinary Clinical Domains composed of subject matter experts, statisticians, informaticists, and machine learning specialists who focus on clinical questions surrounding COVID-19's impact on health. Cross-Cutting Domains have a varied focus that applies to multiple domains. These teams provide an opportunity to collect pilot data for grant submissions, train algorithms on larger datasets, inform clinical trial design, learn how to use tools for large-scale COVID-19 data, and validate results. N3C encourages researchers of all levels to join a Domain Team that represents their interests, or to suggest new clinical areas to explore.
View the full list of N3C Domain Teams and learn how to join!
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Google Drive access for N3C Researchers
If you are an N3C researcher who needs to access documents in the NCATS-owned Google Drive*, please onboard and/or update your preferred Google account here.
*Note that NCATS has a business agreement with Google and documents in this drive are not mined by Google
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The National COVID Cohort Collaborative (N3C) is a complementary and synergistic partnership among the Clinical and Translational Science Awards (CTSA) Program hubs, the National Center for Data to Health (CD2H), distributed clinical data networks (PCORnet, OHDSI, ACT, TriNetX), and other partner organizations, with overall stewardship by NIH’s National Center for Advancing Translational Sciences (NCATS). The N3C aims to improve the efficiency and accessibility of analyses using a very large row-level (patient-level) COVID-19 clinical dataset, demonstrate a novel approach for collaborative pandemic data sharing, and speed understanding of and treatments for COVID-19. | |
CD2H is supported by the National Center for Advancing Translational Sciences (NCATS)
at the National Institutes of Health
(Grant U24TR002306).
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